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Newsletter of the DDS Human Rights Advisory Committee

and the DDS Office for Human Rights

Community Inclusion Edition

Volume 7 Issue 1 March 2017

Promoting social inclusion

The New DDS policy on social inclusion states:

All supports offered by the Department of De-

velopmental Services shall be provided in a

manner that enhances opportunities for individ-

uals to become fully engaged members of their

community. Supports should actively work to

ensure that people are not just “in” the commu-

nity but “of” it.

In this edition of the Rights Review we will look

at some of the ways in which people are engag-

ing in a meaningful way with their community. It

is one of the most basic human rights. We can all

help to make it happen.

Extra Special Teas

When you walk up to Extra Special Teas in Great Barrington, you are

drawn in by the bright colors, the tantalizing aromas, and the calm-

ing music. Located in a beautifully decorated old Victorian house, it

is an environment which is both stimulating and soothing. Extra

Special Teas is many things; a tea house that serves delicious snacks,

a community based day service and employer for people with disa-

bilities, a center for community events.

Extra Special Teas was started by founder Cherri Sanes. She was

looking for day services for her transition age son, Jache, who has

autism. Cheri and Jake knew what they wanted. Cheri “When Jache

grew up, I had a vision for his life: to be part of the community, to

love what he is doing, to be with people his own age. I wanted to

create a place to promote community. I thought about creating a

community hub which could also serve as a safe haven for all people

and their families, a way to educate the public. I thought of opening

a tea house. Tea is communal and healthy and we could serve

healthy snacks. This is how Extra Special Teas was started.”

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Cheri’s philosophy: “We don’t put limits on anyone or anything. Let’s

see what people can do. I wanted to create a happy vibrant environ-

ment. We use lots of bright colors, we want people to feel welcome.

Everyone has something to contribute – we want the public to see

that. They leave here feeling better. We want to be an inspiration.”

Cherri worked with the DDS Berkshire area office to bring her vision

into reality; a community based day service situated in the midst of a

thriving tea house. The original focus was to support young adults

who are on the autism spectrum, but they are open to serving other

folks with disabilities too. Cherie ,“A young man named Tristan lives

in a DDS funded group home in the neighborhood. One day, before

we opened, I was working at the site and Tristan rode up on his bicy-

cle. He said, I hear you are opening up a teahouse. I am looking for a

job and would like to work here. We decided to give him a try. “

Tristan has been working at the Tea house ever since. Tristan says, ”

this is my first job in 14 years. I like the job a lot. I ride my bike to

work every day. I help out with a lot of things, I work the dishwash-

er, I stamp the bags, I help carry things around. I am going to learn

how to bake, because I like to cook. I have a lot of ideas about what

to cook, like a scone with a butter filling. People here are nice to me,

I have made a lot of new friends here. I am proud of where I work. I

tell people at my church and my friends and family about my job.

When I am at home I feel like Clark Kent, but when I am at work I

feel like Superman”

Participants are treated to variety of stimulating, fun and purposeful

activities. An art therapist works with them to create works which

are incorporated into the tea house. The participants work on de-

signs that are printed onto t-shirts and wrappers for power bars

which are baked and sold by the participants.

The program rents space each week at a commercial bakery and par-

ticipants create a wonderful variety of healthy, gluten free snacks

which are sold in the tea house. A garden in the backyard is a source

of vegetables and herbs which are used in the tea house. Plans are

underway for a pottery business; the items can be created at the tea

house and fired at a local kiln. They will soon be selling tea and other

items on their website. This will create jobs for participants in pick-

ing orders and shipping.

The community has embraced Extra Special Teas . Local people love

what they are. They have hosted for several chamber of commerce

events, book signings, and other community gatherings. We recently

spoke with Betsy Andrus, the Executive Director of the Southern

Berkshire Chamber of Commerce about Extra Special Teas. “They

are a part of our community because they are so community mind-

ed. They participate in civic activities, host events, are members of

the chamber of commerce and other local organizations. They

have created an opportunity for their participants to be part of the

community. “

And of course, the participants love it. Cherri’s son Jache is

not verbal but she knows that he is happy. Cherri – “ Every

morning we get into the car to come to the teahouse.

Jache starts giggling and laughing the whole way there. He

cannot say so, but he loves it here. “

Starting up a tea house, opening up a program, getting

funded and licensed by the DDS; this is an enormous un-

dertaking. We asked Cherri, What made you think you

could do this?

“Never underestimate the power of a special needs moth-

er. Everything that I ever did in my life came together in

this project. I love to cook, I love to entertain. I want peo-

ple with special needs to be included in their community. I

know that I am on my life’s path.

There have been a lot of challenges to overcome. But we

stay true to our mission and things have always worked

out” When asked , What would you say to other special

needs parents?; Cherri replied ; “There is hope. There is

something out there for everyone, something brighter.”

Cherri and her son Jache, enjoying a moment

Extra Special Teas

2 Elm St

Great Barrington

MA 01230

http://www.extraspecialteas.org

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Our son - his life; A transition story

By Jeanna Shea

Our son, John Shea is an active 22 year old young man who

lives at home in Plymouth County with us and his two young-

er siblings. John was born with hydrocephalus, better known

as "water on the brain". This resulted in other disabilities:

cerebral palsy, intellectual disabilities, cortical visual impair-

ment (legally blind), and epilepsy. He walks with a walker. He

talks, though sometimes needs interpretation. These chal-

lenges have never stopped him from engaging in a full life.

When John was approaching his momentous 22nd birthday

we thought about the type of life that he would like to live.

He will always require assistance for his personal skills and

our goal was to have reasonable accommodation for him by

building a handicapped accessible apartment onto our home.

This would allow him privacy and independence while still

being close to the family. Through various funding, loans and

hard work we were able to complete his "bachelor

pad" for him.

Then we began to think about what John would like to do during

the day. For our son, a traditional day program was not going to

be a great choice. We visited some day habilitation programs and

some supported employment programs, but none of them were a

good fit for John. Staying at home all day or being stuck in a

building all day was not an option. We knew he wanted to be

physically, mentally and socially active to have a meaningful and

purposeful life. He loves people and he enjoys being “where the

action is.”

We heard about self directed services, which could enable a per-

son to design their own supports in order to live a meaningful life

of their own choosing. We asked John what he wanted to do for

job and he answered “sell hot dogs at Fenway”. Although Fen-

way did not seem feasible, selling hot dogs seemed like a great

idea!

Self-directed services was way to make it happen. We found a

great deal on a hotdog cart and through a combination of our sav-

ings and other funding we bought the cart and got into the hot

dog business. The Agency with Choice model of self-direction

helped make the transition to adult services a smooth one. The

ARC of Greater Plymouth made it easier for us to hire a great staff

person, who is also a wonderful companion, working side by side

with John at “DogHouseDog”.

DogHouseDog" is now a thriving business. John is cooking and

selling hot dogs at High School football games, public events and

parties. In December, John was an important part of our town’s

Christmas celebration, “Holidays in Halifax” selling warm hot dogs

on a cold night!

When John is not busy selling hot dogs he is an active member of

his community. He works part time for “John and Son’s Barber-

shop”, volunteers for meals on wheels and his church, exercises at

the YMCA, and takes the train to Boston to explore the city. He is

learning how to cook, how to paint and how to do public speaking.

Our son has a great life, doing what he loves. John is a wage

earner, socializes with people of all ages, has responsibility to

meet some of his own needs, works on staying physically fit, helps

others through volunteerism, is involved with his family and is

maturing while experiencing life in his community.”

John says “I like selling hot dogs and eating them too”. And so do

his customers!

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Robert works at MAB in many capacities. He is a wood-

worker and has made many items. He made the bench

that they do their gardening on, built a shed and a fence

at his mom’s house, made birdhouses and delivered

them to all the MAB houses; he repairs things that are

broken. He will go to the store to price out items and pick

them up needed to get a job done; he clears snow in the

winter. The program was recently remodeled and he

helped do some of finish work.

Robert says: “They did fix some things, but there is still

some more left to do. The crosswalk light works, but it is

too slow, I would like it faster!” With Robert Schneider

on the job, we have not doubt that all the work WILL get

done. And the community will be a better place for it.

Human Rights

Champion

Making a difference in the community

Robert Schneider is a problem

solver. Robert has been a

participant at Massachusetts

Association for the Blind

(MAB) Community Services

and MAB Works for over 20

years. He is a man with many

talents from woodworker to

community advocate.

As a participant of MAB Works in Alston, he noticed that

the neighborhood needed some attention. The busy

traffic really impeded folks from getting around and ac-

cessing their community. There were several things that

he thought needed to be fixed. These included:

a pole was in the center of a sidewalk.

some sidewalks were in disrepair with potholes.

There was a lack of ramps for someone in a wheel-

chair to use in front of a grocery store and at the end

of the street making the sidewalks inaccessible.

there were construction vehicles from a nearby site

parking on the sidewalk in no parking zones pre-

venting people from using the sidewalks.

the lights at the top of the street in a busy intersec-

tion were not working properly and the crosswalk

light was out.

Robert compiled a book with photos he took of these

problems, included explanations and then came up with

solutions to fix them. He requested an appointment and

met with Senator Sal DiDomenico’s Chief of Staff, Christie

Getto Young, at the State House. He brought his book to

fully explain what the concerns were and asked for some

assistance with the repairs.

Senator DiDomenico and Christie Young visited MAB, held

a community meeting and introduced themselves to eve-

ryone. They gave time for everyone to share their con-

cerns and ask questions. The Senator told Robert that

The Self Advocacy Movement

Self Advocates need to work together.

A train needs tracks to travel on.

Trust and communication are the tracks.

The advocacy movement works best when we

work together.

Joseph Canto—Mass Advocates Standing

Strong

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To reach the HRAC or the Rights Review please contact:

Rich Santucci

Director of Human Rights

Department of Developmental Services

500 Harrison Ave

Boston Ma 02118

(617) 624-7738

Rich.Santucci@state.ma.us

Resource

Roundup

Widening the Circle

It can be difficult for any of us to find and make friends especially for our service recipients. That’s where the Widening the Circle project can help. The idea for the project came from a parent; “We have done a great job in getting individuals out of institutions and into the com-munity. What can we do to help them to get more con-nected to their community, to make real friends?

Commissioner Elin Howe took this question to heart. She looked for an organizational partner who could help with this important work. The Mass ARC shared these values and wanted to get involved . That is how the Widening the Circle project was born.

The project provides training and consultation for provid-er agencies, staff, families, and self advocates who want to help our individuals to widen their circle of friends. Jim Ross, one of the founders of the project says, “The opportunity to form friendships between people with and without disabilities can be found where people live, work and play” .

Jim and his colleague, Mary Ann Brennan have developed a variety of resources which they are happy to share.

There is NO CHARGE.

Introduction to friends training—this 2 hour training is focused on helping individuals to establish and maintain friendships. Participants have included provider organizations, family groups, staff, and self advocates.

Individual consultation—personalized support and problem solving around specific individuals, or chal-lenges.

Organizational consultation—resources to help your agency to be better able to support and encourage friendships for service recipients

Training for trainers—training for people to perform the introduction to friends training.

Training materials and curriculum—the project is happy to share their materials and resources and encourages organizations and others to customize the materials to best meet their needs.

This is an excellent opportunity to make a difference in the lives of individuals.

If you are interested in in scheduling an “Introduction to Friends” training for your group, in becoming a trainer, in getting a consultation or just learning more about the Wid-ening the Circle Project, contact: Jim Ross at jbriii@comcast.net, Mary Ann Brennan at brennen01@charter.net or visit their website http://thearcofmass.org/programs/widening-the-circle/

Everyone needs friends! People with

friends are happier, healthier, and safer.

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How to successfully include Self Advocates on

your Human Rights Committee By Massachusetts Advocates Standing Strong

For more information about MASS and Self Advocacy call

1-617-624-7549

Provide a good orientation to the committee

Explain and discuss the purpose of the committee.

Tell what the meetings will be like and what their

role will be on the committee.

Ask the person what support they will need in order

to be successful.

Help the person to prepare for the meeting

Discuss the agenda and decisions to be made ahead of the

meeting.

Send notes and materials out at least one week

ahead of time.

Use at least fourteen-point font or large print as

needed.

Keep materials simple and clear, avoid acronyms.

Use visuals to support ideas.

Assist the person to make travel arrangements to and from

meetings if needed.

Allow the person to bring a support person if desired.

Encourage meaningful participation at the meeting

Be sure your meeting gives everyone a chance to par-

ticipate equally.

Provide opportunities for self advocates to play val-

ued roles on the committee.

Ask their opinion, or ask them to report on a topic.

Encourage other committee members to get to know

the person.

Encourage respect and teamwork amongst all mem-

bers.

Use people first language.

Have fun!

When restrictions

may be needed

There may be instances when the

department or its providers need

to impose limits on the freedom

of movement, the privacy, the

right to have visitors, or the pos-

sessions of individuals in order to

prevent them or others from be-

ing exposed to unreasonable risk. This may occur as a compo-

nent of a behavioral support plan, or may take the form of an

environmental modification or device. Individuals should be

actively engaged in the planning process; understanding the

need for and nature of the limitation, and the criteria by which

the limitation will be eliminated.

In order for a restriction to be imposed, there is a process

which must be followed:

There must be a compelling safety concern. The individu-

al or others are exposed to risks which are unreasonable,

beyond the risks of typical developmental experiences.

The proposed limitation is the least restrictive method to

mitigate the risk. There must be evidence that less restric-

tive alternatives have been tried.

The proposed limitation would be effective in limiting the

risk. It directly addresses the safety concerns.

There is a teaching plan and strategies to support alterna-

tive, less risky behavior on the part of the individual which

could lead to eliminating the restriction.

There is a plan to fade the restrictive intervention. It in-

cludes measurable criteria to eliminate the restriction or

to assess its ongoing need. Restrictions are not intended

to be long term unless absolutely necessary. They must

address current safety concerns, not historic ones.

Consent is given by the individual or guardian. They un-

derstand the safety risks, the proposed restriction, and

agree that despite impact on other rights, that the pro-

posed restriction is appropriate and needed.

The Human Rights Committee for the provider must re-

view any restrictions being proposed.

The ISP team must also review any restrictions being pro-

posed.

We would never want to impose restrictions upon individuals

unless it is absolutely necessary to do so. If you are a member

of a Human Rights Committee, or an ISP team your thorough

review of this process is essential to insure that Human Rights

are being respected and protected.

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HRAC Members:

Chair – Diane Iagulli (provider)

Vice Chair – Hillary Dunn (Disability Law Center)

Cheryl Authier (provider)

Catherine Carpenter (family member)

Karen Carpenter (advocate)

Beth Charbonnier (self advocate)

Rachel Fox (provider)

Jake Green (self advocate)

Kelli Hyland (provider)

Pam Kromm (family member)

Cynthia Piechota (provider)

Stephanie Stone (DDS service coordinator)

Helen Waldron (family member)

The real life work of Human Rights Committees

Inclusion is for everyone

Betty is a member of the Women's Guild at her church in

Attleboro. She has been a member for years and partici-

pates in both the monthly meetings and the fundraisers for

the Church. Members had always been very friendly to

Betty at the meetings and at mass until things seemed to

change at couple of recent events.

At last years’ Christmas banquet, Betty arrived early and sat

at a table with her direct support professional, expecting

that others would sit at the table of eight with her. As

church members arrived, all found places to sit, other than

with Betty, even after being invited to do so by Betty herself.

This year, the staff did some planning to address this and

decided that Betty would arrive a little later to join others

already sitting, but as she entered, she was told by the

event chairperson, that they had a table reserved for her.

They beckoned Betty over to a small table for two (for her-

self and staff) away from the other tables for church mem-

bers. Betty was disappointed. She did not understand why

she was not welcomed.

The staff person brought the issue to the human rights com-

mittee. They discussed the impact that this was having on

Betty’s self respect and dignity. They talked about what

they could do to support Betty to be included as a member

of the parish and welcomed in their activities and events.

Will, the program director, was familiar with the church and

told the committee that he would contact a friend who is

also a member of the parish. Another committee member,

Eileen, is also friendly with the priest from the church and

would speak to him as well as to the chairperson of the

Christmas banquet. Will and Eileen would be in contact dur-

ing this process and would report back to the committee at

the next meeting.

At that next HRC meeting, Will and Eileen reported on their

conversations with the President of the Women's Guild and

the parish priest. Eileen had told them that she knew no

one meant to be unkind or insulting to Betty, but wanted to

increase awareness to this issue. Betty is a very socia-

ble person who always wants everyone together and

would never have done that to others. Furthermore,

it was pointed out that although everyone knows of

abuse and mistreatment, not everyone is aware of

rights, dignity and respect and there should be in-

creased awareness of this as well. The parish repre-

sentatives took all of this to heart and apologized for

the unfortunate circumstances with assurances that

things would be better. They had not realized how

much of a negative impact they were having on Betty.

At this year’s Christmas banquet, things were differ-

ent. All the members of the Women’s Guild celebrat-

ed the holiday together. There were no tables segre-

gated from the others and everyone sat together and

enjoyed the evening’s festivities!